Purple toes when sitting

[Closf]

Hi, I would like to know if anyone is experiencing something like this. My toes turn purple when I am sitting or standing, and they hurt, they turn back to normal when I elevate them. I have seen older posts here commenting the same. If someone has the same, do you have any diagnose? Something helps? Thank you

[Midgebite21]

What is your current diagnosis (eg Raynauds and/or scleroderma)/ medical history ? Are these symptoms new since your diagnosis or have you not been diagnosed yet? Are you on any medication for Raynauds/scleroderma?

[Closf in reply to Midgebite21]

I am 29 years old, don’t have a diagnosis, I have been through several medical tests for autoinmune diseases and everything is negative. I don’t think it is Raynaud because it is not trigger by cold and disappears when I elevate my legs

[Midgebite21 in reply to Closf]

Your very young for it but it could be a form of venous insufficiency. Is there a history of varicose veins in the family for example? Are you experiencing any cramping? You said it’s painful, is that pain on rest or during exercise eg walking up hill?

[Closf in reply to Midgebite21]

Thank you for your answer, the pain in my toes is just at rest when I sit down, I don’t have pain walking. I had a venous doppler and I don’t have venous insufficiency.

[Closf in reply to Closf]

Can raynaud be trigger by sitting?

[Midgebite21 in reply to Closf]

That’s good to know they’ve ruled that out. Raynauds can be triggered by lots of things, even stress. My biggest trigger is wind and drafts so even sitting on a plane with the air con on can cause me to have an attack. Hope you find some answers soon.

[positivedaybyday]

Hi,

I don't have purple toes though purple blotches at the side of my heels. My toes di ache at times when they are enclosed in shoes/slippers. Funnily wearing open toe sandels/flip-flops really helps. This is fine in the summer but not good in our colder months. I did mention this to my Consultant who said it is caused by low blood flow.

I would talk to your consultant/Dr as we all react differently, don't leave it.

What medication do you take? I'm on Sildenfil which helps my Raynaulds.

Xx

[Closf in reply to positivedaybyday]

Thank you for answering, positivedaybyday. Can raynaud be trigger by sitting? Sorry to ask but do you have heart involvement? That worries me about having blue feet

[positivedaybyday in reply to Closf]

Hi, sorry for the delay in replying, I've been to hospital to take part in research in skin thickness due to Scleroderma.Please don't leave it, contact your Dr/Consultant ASAP. I wouldn't like purple toes either, there must be an underlying issue which needs sorting.

My heart has been affected by Scleroderma but not to the extent of most people who have been diagnosed. My heart is not as strong as most people. Luckily for me I was diagnosed early though it did progress quickly. The Secondary Raynauds developed at a later stage. My hands are stiff & my fingers very bent

All I can say is, I had to really push myself to walk in the early stages. I had a lot of numbness in my feet which made walking difficult. I found if I miss a few days then my legs/feet ache.

Please don't accept there's nothing wrong, keep pushing for answers! Xxx

[Lupiknits]

Mine is scleroderma. It’s really worth asking for it to be checked out, rare as it is.I’ve hardly been able to walk since February when my purple feet and ankles progressed to my knees, swelled, became thick and made it impossible to flex my feet without involuntary squeaks of pain.

A strong course of steroids later, the problem is much reduced but not gone.

I actually managed a visit to the Haworth Parsonage yesterday.

[Closf in reply to Lupiknits]

Lupiknitis, hi. Thank you for answering. Did it start like mine. Purple feet when sitting that resolved when elevating?

[Lupiknits in reply to Closf]

In my case, elevation made no difference I’m afraid. The point at which my rheumatologist was puzzling over my feet, ankles and legs he determined it was not a circulation issue ( otherwise possible, I assume, due to Raynaud’s) and decided on the steroids.

[Aish786]

Hi... I have exactly the same symtoms. And I have just been diagnosed with Raynards phenomenon...

[Lupiknits]

I’d like to add something here. I’ve been to the Rheumatology this morning and was somewhat tearful about the possibility of continuing steroids, which had helped a lot, but zapped my bipolar disorder into warp speed. Fortunately I can return many of the things I bought while under the influence! My Rheumy explained that the fact that the steroids helped confirm his “never seen that before “was likely to be inflammatory. Steroids are clearly not a good idea for me (and I’d appreciate more sleep, please). Based on this, and recent blood tests, he now thinks it’s dermomyositis and I’m starting mycophenolate to see if that helps. From my googling so far it seems dermomyositis is very rare.

I’m sure it’s worth mentioning purple skin problems to a doc, but hope no one is as unfortunate as me. BTW this particular part of my Raynaud’s/Scleroderma mix started a good couple of years ago, but, until the hardened swelling I didn’t point it out to a medic. I assumed it was Raynaud’s related.

[Closf in reply to Lupiknits]

Thank you for your answer Lupiknits. I hope your new treatment helps with your symptoms. I don’t think mine is just raynauds because my toes have a different color most of the time, they just improve when I elevate my legs and they are getting worst with time. I have been to many doctors like 5 rheumatologist and been through many medical exams for vasculitis, sclerodermia, lupus. I had a doppler, capillaroscopy and there is nothing to reach to a diagnosis.

[Lupiknits in reply to Closf]

That.must be very frustrating: I’m so sorry. I suppose the only thing you can do, as we all have to at one time or another, is to point it out every chance you get. Take care